Autism diagnosis postcode lottery exposed (18 July 2018)

Children and adults face shocking waits of more than 2 years for an autism assessment and over 3 years for a diagnosis in some areas of England, according to new evidence. The research was conducted by Liberal Democrat former Health Minister Norman Lamb MP, in consultation with the National Autistic Society and the All Party Parliamentary Group on Autism.

These findings are shocking findings and should act as a wake-up call for the Government and local services.

National guidelines state that people suspected of being autistic should start their diagnostic assessment within three months of being referred to the autism team. But new statistics obtained through freedom of information requests to Clinical Commissioning Groups in England highlight a postcode lottery in waiting times for a first appointment, with many parts of the country falling woefully short of the three-month target in 2016-17.

Berkshire Healthcare NHS Foundation Trust reported that children faced a median wait of 574 days for a first appointment – approximately 1½ years. Long median waiting times for a first child appointment were also reported in areas such as Northern, Eastern and Western Devon CCG (271 days in the Virgin Care CAMHS service) and Cumbria Partnership NHS Foundation Trust (253 days).

In 2016-17, 0% of adults in areas such as South Gloucestershire CCG, the Isle of Wight CCG or Cornwall Partnership NHS Foundation Trust were assessed within 3 months of referral. The target was met for only a fraction of adults in Southampton CCG (4.6%) and only a fraction of children in Northern, Eastern and Western Devon CCG (1.78% in the Virgin Care service) and Hambleton, Richmondshire and Whitby CCG (3%). Barnsley CCG reported that no adults or children were assessed within 3 months “unless required urgently”.

The longest waiting times between referral and the start of assessment in 2016-17 were reported in:

Berkshire Healthcare NHS Foundation Trust – 848 days for an adult and 799 days for a child (more than 2 years)

South West Yorkshire Partnership NHS Foundation Trust – 528 days for an adult and 535 days for a child (1½ years)

North Staffordshire Combined Healthcare NHS Trust – 428 days for an adult (more than 1 year) and 637 days for a child (almost 2 years)

Although an assessment should begin within three months of a referral, there is currently no benchmark for how long it should take to finally get an autism diagnosis. However, the research revealed that it can take several years to receive a final diagnosis of autism in some areas:

1,288 days for a child in Northern, Eastern and Western Devon CCG (3½ years)

1,285 days for an adult in South West Yorkshire Partnership NHS Foundation Trust (3½ years)

799 days for a child in Berkshire Healthcare NHS Foundation Trust (2 years)

Delays in diagnosing autism often mean that many autistic people do not receive the educational, health and social support they need, which can cause significant harm to their life chances.

Many autistic people describe their diagnosis as life-changing. It can explain why someone has always felt different and help unlock crucial advice and support. A failure to get that support at the right time can have significant consequences and lead to the development of mental health problems.

It is important to note that these figures provide just a snapshot, and it is likely that many more examples of unacceptably long waits exist in England. The full scale of the problem will not be known until April 2019, when the NHS publishes waiting times for every area for the first time. Where there are excessive waiting times, commissioners must act and develop new services or add capacity to existing ones.

Norman Lamb is demanding urgent action from the Government to tackle the wholly unacceptable postcode lottery in waiting times for an autism assessment, which is potentially leaving thousands of people without the right level of support. The Government must establish formal structures to hold each area to account on its waiting times from April.

He is also calling on the Government to establish a new waiting time standard from referral to a final diagnosis of autism, and to carry out the work needed to identify a benchmark that is clinically appropriate for the majority of cases. These waiting time standards must be of equal status to those in other areas such as cancer care and A&E.

In response to the findings, Norman Lamb said:

“These scandalous waiting times are happening despite clear evidence that early diagnosis and intervention can make a massive difference to people’s life chances. In many cases, a diagnosis is necessary for children to access vital support, including Education, Health and Care Plans.

“We know there can be complex cases which require several follow-up appointments with different specialists, but there is no excuse for the widespread delays we are seeing all around the country.

“I welcome the fact that the Government is starting to collect data on waiting times between referral and the initial assessment, but it is not just about the first appointment. Getting the diagnosis is critical thing so that autistic people get the support and assistance they need.

“The Government has an obligation to set a maximum waiting time standard from referral to a final diagnosis of autism, as well as ensuring that data is published for each mental health trust and CCG so that local areas can be held to account for their performance against this target.”

Mark Lever, Chief Executive of the National Autistic Society, said:

"It's completely unacceptable for autistic people and families to be waiting many months, even years, for a diagnosis - just because of where they live. This research highlights the scale of the crisis and the alarming variation across the country.

"Many autistic people and parents describe their diagnosis as life changing. It can explain why someone has always felt different, help unlock barriers to vital support and enable people to take control of their lives. But long waits are traumatic and pushing people into anxiety and depression. Autistic people and families are desperate for help and are breaking down under the strain.

"These shocking findings should act as a wake-up call for the Government and for local areas, which must act and develop better or new services. The Government has taken an important first step by starting to collect waiting times. But unless each area is held to account for bringing down their own waiting times, we won’t see the vital improvements that autistic people and their families desperately need.”

Case Study: Sarah and Edward

Sarah, 37, lives in Halifax with her partner and two children. Her three-year-old son Edward had been facing an 18-month wait for an autism assessment. But, after already being on the pathway for a year, Sarah couldn’t face the prospect of her son would start school without a clear understanding of his why he’s struggling and how to support him. She felt helpless and, as a last resort, took out a loan and sought a private assessment.

The National Autistic Society say that Sarah isn’t alone in seeking a private diagnosis out of desperation and that parents shouldn’t be feeling like this is the only way.

Sarah said:“The last year and a half have been awful. It's been soul destroying seeing Edward struggling and not knowing why or how to help him. We felt helpless.

“We sought help when he was two and were referred for an autism assessment a year later. But we were then told that the waiting list was 18 months for a first appointment – and our own research suggested it could be even longer. We just couldn't face any more uncertainty and didn't want Edward starting school without a clear knowledge of his problems or the type of support he'd need. We were desperate and felt like the only option was to take out a loan seek a private assessment.

“We’ve heard that a private diagnosis isn’t always accepted but, thankfully, things do seem to be improving for us. I finally feel like we're being listened to, we're now working with the local autism team and they're helping put things in place. It’s just really disappointing that we had to resort to this to get here, just because our local services aren’t up to scratch. It’s not fair to put this additional pressure on families.

“I believe that Edward will need to go to a specialist school and we can now apply for an EHCP to make this possible. I imagine this will be another battle, as places are so limited, but it'll be worth it to get Edward the support he needs in school.

“Every book I read talks about the importance of getting children the right support from a young age, and equipping parents with the knowledge and skills they need. This will be impossible until we bring down waiting times.”

Notes on the data

The data was obtained by former Care Minister Norman Lamb MP, in consultation with the National Autistic Society. The figures apply to the year 2016-17.

27 mental health trusts provided information in response to the FOI request (between November 2017 and January 2018). A further 16 trusts confirmed that they were unable to provide any of the information requested – 6 trusts said that they did not provide a specific diagnostic service for autism; 5 trusts said that responding would exceed the cost limit; and 5 trusts said that the information could not be collected or provided for other reasons.

Only 22 clinical commissioning groups (CCGs) were able to provide some information about autism diagnosis waiting times in their area. A further 134 CCGs said that the FOI request should be directed to another organisation. The responses were received between October and December 2017.